kateybash 09/05/17
Last reply 1 year ago
Lumbar puncture normal..what now!!

Hi folks,
I had numerous brain lesions in March, however the results of my lumbar puncture and visual test came back normal. Wher does that leave me? I still have balance problems with burning pins and needles. Is this going to be a nightmare life?? Don’t know what to think. So upset by all of this.
Kate

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
1 year ago

@kateybash , unfortunately, this leaves you in limboland for a bit longer.

Brain lesions occur for a variety of reasons and are of various types.

It seems that a diagnosis of MS cannot be made at the moment, so you need to discuss what this means with your Neuro.


kateybash
1 year ago

Thanks Stumbler, I know it means another MRI soon but can’t believe this as I now don’t know what to say to friends and work colleagues. I actually feel embarrassed. No one see’s how I actually am feeling. I have had horrible balance problems and burning all day. What to do now eh? Feeling very low even though I know I should be grateful in some sense. It’s just the not knowing, yet knowing in my head how I actually feel.
Thanks for replying, I could use any advice today.
Kate


vixen
1 year ago

Hi there,

Well it may or not be MS but we can all share those extended agonies of not knowing! Have faith in the fact that the dots will be joined up and that one you have discovered what’s going on there will be a more clarified treatment course for you. Keep strong, you are not alone!


kateybash
1 year ago

Thanks Vixen, I feel like a good cry. It’s been a really horrible time with these symptoms and I feel so alone even though my husband is amazing. Just don’t know what to tell people either. Where to go from here. Thanks a million, really appreciate your comment x


kateybash
1 year ago

@stumbler, would you know how things work with an MRI after this? Would it be if lesions were still the same as the last time would this episode be put down to a one off or if there are further lesions what happens then? Sorry for asking so many questions and I know this site is not for people medically trained but just wonder really how things work now???
Thanks again
Kate


stumbler
1 year ago

@kateybash, I’ve located the following websites that discuss this kind of situation :-

http://multiple-sclerosis-research.blogspot.com/2014/07/is-ocb-negative-ms-different-disease.html
http://www.healthcentral.com/multiple-sclerosis/c/question/56111/28080/
http://www.mswebpals.org/dee.htm

It’s very much a watch and wait situation. But, you do need some medication to help with the ongoing symptoms. You could try contacting the local MS Nurse to discuss this. I doubt that you’ll get turned away once you explain the situation.

You can find contact details for your MS Nurse here, https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services

You should also maintain a symptom diary, so that you can provide the neuro with a summary when you see them.

The other alternative for you is to ask to be referred to another Neurologist for a second opinion.


merfield
1 year ago

You are really having a rotten time – not knowing is the pits. I’ve been through similar without pins and needles but when I was told I wasn’t surprised, more relieved it had a name. Try not to stress if poss as it can make symptoms more obvious. Your lovely kids will rally round and you’ll find support here when you need it. I really hope you get an answer soon. Keep strong!!! We are here!


katy79
1 year ago

@kateybash

1. Please don’t feel embarrassed with friends and colleagues. If they are aware of the situation. just explain to them that MS is suspected but still under investigation – and that unfortunately the path to diagnosis is not driven by the severity of symptoms you have

2. Have you been diagnosed CIS (“clinically isolated syndrome”) as a result of your first episode? This is sometimes the diagnosis given to people who have had a single (isolated) clinical episode but where there isn’t the (multiple) evidence to support a full MS diagnosis. If so, it may be possible to start one of the “moderately effective” DMDs. Possibly worth discussing with your neuro if you are worrying about sitting and waiting for further conclusive evidence and being exposed in the meantime. Further info on the MS Decisions Trust page

3. A second MRI may be required to help you meet the Macdonald diagnosis criteria (dissemination of MS activity in space (lesions on different bits of your CNS) and time (attacks results in lesions at different times)). It is possible that you may have met this test from a single clinical episode and MRI if the MRI showed evidence of “active” enhanced lesions and old ones scattered across your CNS but…..

3. …even if your initial MRI did get you to technically meet the Macdonald MS diagnosis criteria, that of itself doesn’t get you any further forwards. A diagnosis of RRMS only gives you access to the same DMDs as a diagnosis of CIS. You need a diagnosis of “active” RRMS to be eligible for the more effective tecfidera or the highly effective lemtrada as a first line treatment. This means evidence of two attacks in two years.

4. If you have RRMS it may well be that the same MRI or other evidence of relapse activity which can be used to show dissemination in time (it sounds as though you meet the dissemination in space criteria) can also be used to show your MS is active. This is what happened with me (I went straight from a diagnosis of CIS to “active” RRMS when a second MRI three months after my first showed one new lesion. As I was holding out for lemtrada as my first DMD (rather than cracking on with one of the moderately effective ones available for CIS) this worked well for me)). So no time wasted (my three months also coincided with my transferal from private to NHS care with my neuro which was helpful)

5. A lot of people seem to be left in limboland until they can get a diagnosis of active RRMS (even if there is evidence to support a diagnosis of MS or MS is strongly suspected). This can be helpful as a diagnosis of RRMS means you need to speak to the DVLA to get a restricted driving licence, could loose the benefit of private medical cover and may need to tell other insurers (e.g. travel). On the plus side of eventual diagnosis, if you have critical illness you could get a pay out and you will be covered by the equality act at work! More seriously, whilst it is a manageable condition there are consequences of receiving an RRMS diagnosis so it is important that neuros get it right. All of the DMDs come with some pretty punchy side effects – some of which are irreversible – so it is important that you have confidence in your diagnosis before embarking on a treatment which may introduce its own new complications into your life (e.g. taking on the risk of side effects of lemtrada if I was worried that my MS diagnosis was on shaky ground would have been much tougher decision to make).

I hated limboland – and felt like a sitting duck. dealing with the MS diagnosis has been much easier. Hoping that you don’t have MS and that there is a kinder explanation for your symptoms – and very much hoping that either way you get resolution soon so that you can begin to process and move on.

xx


kateybash
1 year ago

@stummbler, Vixen, Merfield and Katy,
I cannot tell you from the bottom of my heart how much your comments meant to me yesterday. Sorry not managed to message yesterday but for some reason the site was down. Honestly, it is a minefield of worry. I now have an appointment to see my neurologist on the 7th June so I now need to think of a list of questions. I feel so grateful that there are people out there who understand. It would have been easier to have a broken leg, at least that would be noted. These invisible symptoms are so depressing and the knowledge that I am on a long road of uncertainty is really hard. Thanks again, Katy, you are a wealth of information and I am reading and re-reading your comments, Stumbler, thanks for the web site info. What would we all do without your experience. Oh well another day ahead. Happy thoughts everyone.
Thanks
Kate

Post Comment

You must be logged in to reply to this topic.